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Monday, July 30, 2012

It was a rough start to the SOFT conference for our family (our 1993 van broke down twice and left us in dangerous situations). Once at the conference, we all had a great time meeting, reuniting, and conversing with other adults and kiddos with rarer Trisomy diagnosis'. While at the conference, Kayli swam in the hotel pool with other Trisomy Families, saw the monumental St. Louis Arch, strolled in the walk of Fame, got her face painted with hearts (her signature icon), had a charactature picture of herself as a princess drawn, Released balloons for her Trisomy Angel Friends, took many pictures with her Trisomy Families, and went to 2 workshops to learn more about Assistive Technologies and Chiropractic help for digestion. If you are in, or traveling through St. Louis Mo, be sure to look for the billboard that Kayli and some of her Trisomy friends are now proudly appearing on!!!

Sunday, July 15, 2012

Kayli and family are getting ready to go to a Trisomy Conference!!! Our princess will go on the trip with a lot of "luggage". Some may say she is high maintenance, but we like to think her luggage means she is going somewhere we were told she never would! Packing up all the luggage is a small price to pay for the world she opens up for us! Kayli's list of necessities: air compressor, concentrator, stationary suction machine, portable suction machine, suction catheters, HMEs, Fisher Paykel, pulse oximeter, portable oxygen, feeding pump, extensions, formula, feeding bags, emergency bag, diaper bag, wheelchair, ambu bag, medications, and clothes....lots of beautiful clothes. Kayli's closet full of clothes mean I selfishly get to see that outfit that I admired on the store rack, on her. While some children get spankings at her age, my soul fills with joy with every pat on her butt to comfort her because of her developmental delays. I whisper sweet loving words of encouragement into her tiny heart shaped ears and she fills my soul with an energy like no other. Kayli's Krusade and this trip leads us to new memories. Kayli is bringing us across the state to see God's wonderful creations first hand. Our family will sing travel songs in a confined space so Kayli's hearing impaired ears will be able to hear the joy in our voices. Kayli will be bringing a lot of luggage, and along with her luggage, she brings memories. We will be introducing and reuniting Kayli with other families with Trisomy loved ones. Some families will be inspired by Kayli's Krusade, others will inspire us. We will all share in the joy of Loving a Child with Trisomy. We will be one, in a world that almost wasn't ours. So, I say, Bring on the Luggage Kayli! You are taking us places we never would have gone! At 3 years old, you continue to show us a whole new world!

Thursday, July 12, 2012

Kayli's appt today: The Pediatric Spine Orthopedic at the Chidlren's Hospital in Chicago all but told us he is not interested in helping Kayli because of her T18 diagnosis. That's ok though because the wacky dr does not sound intelligent enough to treat her anyways! Here are some unbelievable things that came out of his mouth! 1. Kypho-Scoliosis is NOT painful....unless you are old. 2. (Kayli's shoulder blade is out of place because of her spine deformities.) She will never get range of motion in her shoulders, even if I helped fix her spine because she has T18. (huh?!). 3. Risser Casting is only for older people. (false) 4. There is another casting system that I don't know the name of...something french... I don't do the casting, but I've sent everyone that wants that casting to Shriners. (Next sentence was...) I've only had one person begging for the new casting system and I sent them to Shriners. 5. I'm a surgeon, but I won't do surgeries for little people like her. (he is an orthopedic spine surgeon at a CHILDREN's hospital!) I don't do casting. I can brace her though.... (???? wth?!!) 6. When I asked what Kayli's spine curvatures were, he hadn't even looked at the Xrays taken today and had no interest in looking at them. He said they don't measure kyphosis degrees because kyphosis doesn't cause body organs to move. (wrong, it is THE most dangerous spinal curvature!) 7. I don't do the growing rods surgery, and I don't suggest fixing her spine (surgically) because her lifespan won't be long and her spine is too small to ancher the growing rods to at her age. (yes, he actually said he KNOWS her lifespan!) (keep in mind, a surgeon in OH has 2 patients as I write this, who are Kayli's age and with T18 and had the growing rods surgery) 8. (I argued his comment about Kayli's lifespan and the pain she is in while she IS still here with us.) To which he replied... You obviously don't believe the statistics about your daughter's diagnosis and you think she is better off than ALL the other children with Edward's Syndrome. (This is when Momma Bear came out!). I asked him if he has researched or read resent research about Trisomy 18, to which he replied NO, none at all. I started explaining the spectrum of T18 to him when he yelled over me that he didn't want to hear it and I don't need to tell him about T18. After I calmed down, I asked him more questions and told him that since he admittedly does not know as much as I do about Trisomy, he needs to speak to me about Kayli's orthopedic condition and not mention Trisomy 18 again as an excuse for not treating her. He agreed to brace her with a TLSO, and we both silently agreed not to make another appt for him to see Kayli again. He quickly left the room as I asked the Resident Dr to compare Kayli's past curvature degrees (on a disk I brought) with the degrees they found today. The worst part is...there were student dr's in the room to which he TAUGHT this misinformation! I am ashamed for the MD who had the honor of meeting Kayli today. Ashamed of his poor intellect in such a high status role. I lost respect for another physician today. This one for his lack of intellect, and his lack of interest in continued learning. On to the good part! Kayli inspired the Xray tech and the student learning from the Xray tech! AND>>> the orthotist who fit Kayli for the TLSO was smitten by Kayli and is meeting with us tomorrow at a different location, to give her the TLSO instead of making Kayli wait a week (usual turn around time frame)!!! The boys picked out a purple/blue camouflage transfer (coloring) for her TLSO (back brace). Kayli has another ortho appt tomorrow. The ortho moved from Shriners (a place that refuses to treat Kayli because of her Trisomy diagnosis) and is Team Kayli, so it should be a good visit! :D He is following up with Kayli's club feet corrections. <3

Wednesday, July 11, 2012

We are so proud of Kayli! We got her Summer School report card today, and she has improved in many areas! It's hard to believe that nearly 3 years ago, we were told she would never know who we are, much less have purposeful, functional movements and achievements!!! Kayli's Daddy says "if studies say we only use 10% of our brain, and if Kayli uses all 25% of hers....she could be smarter than us!" LOL Keep up the Great Work, Sweet Pea!!! <3

Please keep in mind, these IEP objectives are for a 3 year old, who survived 32 minutes of anoxia (no oxygen) and is patiently working with 25% of a typical 3 year old brain size. Kayli has taken on the challenge of relearning reflexes that are she had, and that are typically innate at birth!

The following are some objectives (working tasks) for long term goals in her IEP:

1. Kayli will shift gaze between two lights/objects presented approximately 5-10 inches apart at eye level, above eye level, and below eye level, without sound/movement cueing.
KAYLI IS ABLE TO MEET THIS OBJECTIVE 1 OUT OF 4 ATTEMPTS!!

2. Kayli will bat at an object in front of her or above her with verbal prompting.
KAYLI IS ABLE TO MEET THIS OBJECTIVE 2 OUT OF 4 ATTEMPTS. KAYLI IS ABLE TO DO THIS WHEN PRESENTED WITH OBJECTS IN THE LIGHTBOX.

3. Kayli will reach for an object at close distance with verbal prompting.
KAYLI IS ABLE TO MEET THIS OBJECTIVE 1 OUT OF 4 ATTEMPTS. WHEN THE SPEAKER SAYS "PUSH PUSH" KAYLI WILL ACTIVATE THE BIG MAC SWITCH.

4. Kayli will respond to a familiar voice by turning her head or eye gaze toward the voice.
KAYLI IS ABLE TO COMPLETE THIS OBJECTIVE 1 TIME IN 15 MINUTES. SHE RESPONDS WITH AN EYE GAZE TOWARDS THE SPEAKER.

5. Kayli will respond to a noise producing toy by turning her head or eye gaze toward the toy.
KAYLI IS ABLE TO COMPLETE THIS OBJECTIVE 1 TIME IN 15 MINUTES. SHE RESPONDS WITH AN EYE GAZE TOWARDS THE TOY.

6. Given task set-up with gravity eliminated. Kayli will apply pressure with her hand, arm, or leg to activate switch toy.
KAYLI IS ABLE TO PERFORM THIS OBJECTIVE WITH 20% ACCURACY.

7. After appropriate positioning, and with hand-over-hand assistance as needed, Kayli will activate a familiar switch-activated toy, presented to her left, right, or in midline, at least three times in succession. KAYLI IS ABLE TO PERFORM THIS TASK 1 OUT OF 5 ATTEMPTS. KAYLI, WHEN GIVEN TIME, IS ABLE TO ACTIVATE A SWITCH.

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥